A-Z

Organ donation

Deciding to become a living donor

Every year hundreds of people die while waiting for an organ transplant or before they even get on to the transplant list. Organs are in short supply and the gap between the number of organs available for transplant and the number of people waiting for a transplant is increasing. This growing demand has been partially met by more organ donations from living people, usually a kidney, as a healthy person can live a normal life with only one functioning kidney. Kidneys from living donors have a better chance of long-term survival than those transplanted from people who have died. The main reason is that the donor is alive and healthy. Nearly one-third of all kidney transplants are from a living donor (NHS Blood and Transplant website December 2015).
 
Part of a liver can be transplanted and it may also be possible to donate a segment of a lung and, in a very small number of cases, part of the small bowel. For all forms of living donor transplants, the risk to the donor is considered very carefully. Before a living donor transplant can go ahead, thorough assessment and discussion must take place and strict regulations met. The Human Tissue Act 2004 established the Human Tissue Authority (HTA). One of its roles is to regulate living donor transplants in the UK (see Assessment and tests’).In this summary we will only be discussing kidney transplants as none of the people we interviewed had donated other organs.

Deciding to become a donor is a major and serious decision. Most people we interviewed looked on the internet for more information before talking to their GP or a transplant nurse. Many also discussed their thoughts with family and friends.

Living donors are often a close relative but may also be a partner or close friend of the recipient. Donors may also offer to give a kidney to someone who is on the waiting list for a transplant but whom they have never met (non-directed altruistic donation or anonymous donation).
 
Some of the people we interviewed had donated a kidney to a family member with kidney failure.
 

In 1997, when Margo was living in America, she donated one her kidneys to her younger brother,...

In 1997, when Margo was living in America, she donated one her kidneys to her younger brother,...

Age at interview: 61
Sex: Female
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At the very beginning, he [brother] had an eye infection. I always start with this part of the story that he had this terrible eye infection, and they could not cure it. So they kept, you know, a month and then another month, and another month and then finally his kidneys went.

Oh excuse me, the eye infection cleared up and three days later he was in the hospital. I went to visit him and he was yellow. His skin colour was yellow, his eyes were yellow. Everything was yellow. I thought, “Oh my Lord, what’s happening?”

So with that they found out that he needed dialysis. And he was on dialysis for five years, and it doesn’t work really well with him.

I’m one of four children and that particular brother and I had the same blood type. So therefore that would be the easiest. The others [siblings] couldn’t do it, and I’m O-positive anyway which means I’m the universal donor. No, it just, it was kind of a, “This is the way it is.” And I could have said no, I surely could have, but that never occurred to me to say no. It never occurred to me.
 

 

Darren donated a kidney to his daughter. She’d had kidney problems for many years and was on...

Darren donated a kidney to his daughter. She’d had kidney problems for many years and was on...

Age at interview: 39
Sex: Male
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Basically, my daughter was in and out of hospital for various things related to her kidney problems and she had to go on dialysis, which I didn’t know much about at the time. I didn’t know anything to be honest.

But her mum approached me and I said yes, we’ll have to do something now because it’s getting really potentially life threatening, basically. So we contacted the hospitals. I can’t really remember that because it was a couple of years ago now. It’s taken about two years to finally get to this stage.
 

 

Harmanjit didn’t want her father, an active outgoing man, to go on dialysis, so offered to be a...

Harmanjit didn’t want her father, an active outgoing man, to go on dialysis, so offered to be a...

Age at interview: 31
Sex: Female
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They [GP] referred him [father] onto a nephrologist initially. But what happened is, each time he used to go and have his checks – blood tests and 24 hour urine analysis – he used to find his Creatinine and his kidney function level used to be diminished each time. Eventually, it plateaued at just 30%. That was both kidneys together. The combined function was 30%.

Then the nephrologist [kidney specialist] wrote and said, “I think you’d better check some of the options that are available to you, just in case all of a sudden you do go down to 10%. Then it’s dialysis. You need to know what options are available.”

So we got an appointment and we went to see, and he [doctor] mentioned about peritoneal dialysis. And then they did the haemodialysis as well, where they filter the blood. We went for that one.

And I just saw all of those other patients there and the thing is, my Dad is quite a lively person. He gets involved in committees and charities. He’s not one to stay at home. So for three times a week you have to go and you have to sit there for, you know, and I just couldn’t imagine my Dad doing that. And the other one, it was eight hours, nine hours, and you’d have to have peritoneal and they’d put a tube in and filter all the things.

So I just said to him, we came out of the door, and I said to him, “If you need a kidney, you can have mine.” Because I was like, “I can’t, you know it’s better to have the kidney, do the transplant, and then you carry on as normal.”

Had the doctors, had the doctors suggested anything?

No. But they had suggested you could consider being on a transplant list. But then I’d read some data that they’d given me and information and they said an Asian person only has a one in a hundred and twenty five thousand chance of receiving an organ, whereas an English person would have a one in three chance. So I thought well, and the thing is each time his levels, kidney function kept dropping. So I said to him, “Well, if you need a kidney, then I’ll donate.” That’s what happened.
 

People from Black African, African-Caribbean and South Asian communities in the UK are more likely to need a kidney transplant than the rest of the population. Unfortunately, while the need for donor organs is higher than among the general population, donation rates are relatively low among Black and South Asian communities, reducing the chance of finding a successful match. Therefore, not only are members of these communities at higher risk of kidney failure, it is also harder to find a suitable donor and waiting lists are growing (see What is organ donation).
 
A few people donated one of their kidneys to a friend after learning that they were seriously ill and would need a transplant. Several mentioned that they had been aware of the difficulties of life on dialysis and were keen to save someone from this ordeal. 
 

Wallee heard two very moving and inspiring stories about living kidney donation. When he heard...

Wallee heard two very moving and inspiring stories about living kidney donation. When he heard...

Age at interview: 58
Sex: Male
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On BBC World Service I heard this incredible story about this man, who was a business man in Philadelphia and flew to New York every so often, fairly frequently I think, to do some business there. And he ended up befriending a man from the Lebanon I think it was, who became his taxi driver. And every time he picked him up and looked after him while he was in New York.

And one time he flew in and somebody else picked him up and he said, “Where is Abdul?” You know, whatever the person’s name was. And the guy said, “Oh he’s gone home to Lebanon, he’s not been well” or something. And he found out that he was having kidney failure. And I heard this story that he was a man who had a family, only knew this person as a taxi driver, but donated a kidney to him. And I was completely stopped in my tracks, that someone could be so generous given his circumstances, given the relationship wasn’t that close or it didn’t appear to be that close.

Within a couple of days I heard a second testimony to someone donating a kidney. These two friends, two women friends, and one had given a kidney to the other. And this was lately again after the situation, and they were both out jogging. And again I can’t remember the interview, but it was again very moving. And the thing that struck me was I thought, well, you can actually donate your kidney to somebody outside your family. You can actually, you know.

And I thought to myself, there’s no reason why I couldn’t do it. That was really my thinking. There’s no reason. I’m healthy, I’m not married, I don’t have any kind of concerns. And so I made the decision that I could do it.

So I sent an e-mail to my friend and he sent me something back really beautiful. And he was really, really overwhelmed with the generosity of that offer. And he said, “Thank you so much. Regardless that this could ever actually happen, you’ve already said something very powerful to me and I want to say that to you.” And he said, “Okay, well what you need to do now is go and see your doctor.”
 

 

Annabel knew that one kidney was enough to live healthily on. When she found out that a friend...

Annabel knew that one kidney was enough to live healthily on. When she found out that a friend...

Age at interview: 64
Sex: Female
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I knew my friend [friend’s name] husband, [name], had polycystic kidney disease and I knew he was going to require a kidney. I also knew, because I’d been a health writer for a long time, I also knew you could live perfectly well with one kidney because I’d written about it previously. But I didn’t know that [my friend] had had some tests and had been, the doctors had discovered she wasn’t a good match for [my friend].

So it started at a party actually where I was chatting to [my friend’s husband] and [my friend]. They were telling me that [my friend] wasn’t a good match and that their three children wouldn’t be suitable because polycystic kidney disease is inherited, so it’s conceivable that one of the kids would have it. 

So, basically, we were talking and I said, “Well,” I said really half-jokingly, “Oh well you can have one of mine if you like.” Because I knew that you could live perfectly well with one. And I’m fit and well. But it was really quite a light hearted, off-hand remark to start off with.

But then I did start thinking about it and I thought about it quite seriously, because I thought to myself well, it’s quite a big thing to do. He said, “Well I don’t know what to say, Annabel.” And I don’t think he thought I was serious.

But anyway we got to talking about it a few weeks and a few months later. And I said I was serious. And I talked to my husband, who’s a GP, and asked him what he thought. And he thought that it sounded alright. I mean it’s not something that you have to leap into very precipitately because you know that you’re going to be checked out at huge length anyway. And so that even if you volunteer, or first of all when you volunteer you don’t know whether you’re going to be a good match or not. 
 

Some people we interviewed donated one of their kidneys to someone waiting on the transplant list who they did not know. Their reasons for wanting to donate to an anonymous recipient were varied and unique to each person.
 

Di was interested in donation for some time. When she learnt it was legal in the UK to donate to...

Di was interested in donation for some time. When she learnt it was legal in the UK to donate to...

Age at interview: 58
Sex: Female
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I knew you could donate to family or friends. I once had a conversation with other people about it and, without hesitation, I knew that I would donate to somebody if they needed it. So that wasn’t a problem. It wasn’t until a few years later that a friend of mine in America told me that she was about to donate to a stranger. Not quite the same as over here, in that she actually saw his name somewhere as needing a kidney, so she put herself forwards. They did actually meet before and got to know each other then.

I don’t know, I was just so totally bowled over by the whole idea that you could just give your kidney to somebody who needs it, not wait until perhaps a relative needs it who may never need it.

So I did some Googling, and found that it wasn’t legal in this country. So really I put it to the back of my mind. But loads of things kept reminding me. My ears would prick up every time I heard something to do with kidney donation, or it seemed to be everyday I was hearing something which I never heard before.

And then I was off work for quite some time because I suddenly developed cataracts in both eyes. It was almost over a very short period of time, and they laid me off work because of it. And while I was off work, it was advertised, not advertised, it was on television about the first altruistic donation in this country.

And I thought well it can’t be. It’s not legal. I did a quick, another bit of Googling and it was. It had suddenly, without me even knowing, become legal. And I thought, “Oh my goodness,” and everything seemed to just fit in because before I worried about, what if it becomes legal? What happens about my job? They’ll never give me the time off. And what about this? What about?

There seemed to be something holding me back even though I didn’t know what. It just seemed that everything had fallen into place and now was the time to do it. So, although I can say my heart told me I want to do it, but I knew I had to get my brain working and find out. Okay because you want to do something doesn’t mean to say that it’s the sensible thing to do, or it’s the right thing for you.

So I did some more Googling about the operation, the evaluation tests, as much as I could do. And it was strange because the more I Googled, the more determined I was to do it. Nothing I found put me off at all. But I’ve come across people on dialysis or people who’ve just had transplants, people waiting, and it was just an eye opener. 
 

 

Chris, a doctor, had always been interested in helping people. Everything he read led him to...

Chris, a doctor, had always been interested in helping people. Everything he read led him to...

Age at interview: 73
Sex: Male
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Well my background really has been trying to see how much I can contribute to reducing suffering in all sorts of ways. And, for some reason or other, I just came to the conclusion that this was the right time to do something. In other words, we’d had two or three year’s experience with altruistic donation. I was absolutely confident that I didn’t need two kidneys, that one was enough.

From talking to the surgeons and reading the literature, I was confident that the chances of anything going wrong were much less than they are of me dying on the motorway driving from where I live into [place name]. In other words, I accept risk. I’m perfectly happy with risk in life. I’ve taken a lot of decisions in places that are extremely risky and there’s no problem for me. So it was no threat. So it seemed to me a very obvious thing to do.


One of the things that precipitated my doing this was reading an article by someone called Andrew Carnegie, who wrote an article on wealth about 100 years ago. For a time he was the richest person in the world. He wrote an article towards the end of his life and he said, “The person who dies thus rich, dies disgraced.” And I realised I wasn’t going to have millions to give away, millions of pounds to give away, but I did have a kidney that I didn’t need. And what was the point in waiting until I died to donate the kidney, because that really means that I didn’t honestly want to donate it anyway. That’s the same with money. So that really stimulated me, having read that brilliant article.
 

 

Paul, a GP, knew that a transplant made a huge difference to a patient’s life. When a patient...

Paul, a GP, knew that a transplant made a huge difference to a patient’s life. When a patient...

Age at interview: 56
Sex: Male
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I’m a GP, so I do know about – from a professional point of view – the problems of kidney failure and why kidneys make such a difference.

I’m also aware that living donation made a big difference. I think that is an experience that I learned from talking to patients and also a friend of the family who’s son, who’s a contemporary of mine, had a kidney donated by his father 30 years ago. And he remains really very healthy indeed. So I was aware how dramatic a difference it could make to people’s lives. I’m also aware that I’m healthy and fit and that two kidneys are not strictly necessary.

So, with that kind of information in the background, when I met somebody, again it wasn’t just one incident, it was a set of incidents. It was meeting somebody who explained that getting a kidney had been like winning the lottery from his point of view. He was somebody who’d been on dialysis for a number of years.

Right, was this a patient?

It was a patient, yes. It was somebody I saw in the course of work. In fact he said it was better than winning the lottery because he said even winning the lottery wouldn’t have changed his life as much as that. And I suppose I realised at that point I could, it crystallised things a little bit. It made me realise that I could perhaps donate a kidney myself.
 

 
Maggie was interested in altruistic non-directed kidney donation before it became legal.
 

A conversation over dinner led Maggie to think about becoming a donor. She’d have been grateful...

A conversation over dinner led Maggie to think about becoming a donor. She’d have been grateful...

Age at interview: 66
Sex: Female
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About five years ago, maybe five and a half because it was Autumn, I was at somebody’s dinner table having dinner with some friends. My husband was there. And the subject of a friend, whom I didn’t know but have since become friendly with, a man who’s now in his late sixties who had kidney failure. And had an organ from his brother, which had gone wrong after a few years. And he was now back on dialysis, and blind and had diabetes.

The subject of this person was raised. And we chatted about it. People were saying how very sad it was. And how, at his age, and Australian, living in this country, perhaps he wasn’t going to get much priority in terms of a second transplant, and that he was pretty desperate.

And then I thought, well I wonder, because I didn’t know whether people could give anonymously, “I wonder if you couldn’t get a kidney from any well-wisher?” And then I thought, “Well, me for example?” I thought if I were in his position, obviously I’d be very pleased if somebody, a friend or somebody unknown, were to offer me a kidney.

So then I said, “I think I’ll offer a kidney, either to [friend’s name],” this Australian, or anybody else. So my husband looked a bit surprised, and we talked about it a bit informally over the table, perhaps with a few jokes. And then later, back in [place name], talked about it more seriously. And I asked my two children, who were then in their early twenties or mid-twenties, what they thought about it. And after the surprise they said, “Yes, of course, you must. You do that if you think that’s a good idea and if it turns out that the risks are low to your own health.”
 

 

Clare wanted to give something back to the NHS after years of help for alcoholism. When she heard...

Clare wanted to give something back to the NHS after years of help for alcoholism. When she heard...

Age at interview: 59
Sex: Female
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For some years now I’ve realised I’m aware of how different my life is now from say thirty years ago. Thirty years ago, I was drinking too much. I was oscillating between anorexia and alcoholism. I was depressed. I was going downhill fast. I’d been stopped for drink driving twice. The second time involved losing my licence for three years, which as a vet was disastrous. In the middle of all that, ironically, I was going out with a bloke who was an alcoholic. And we recognised the problem in each other. And it was him that prompted me to do something about it.

I did, and after a hard struggle I stopped drinking twenty two years ago. A year ago, I realised it was 21 years and I wanted to mark that achievement in some way. I was very aware of the debt that I owed the NHS. I had the most wonderful psychotherapist during this time.

The reason I decided to donate a kidney, I came to really by default. I wanted to do something for myself to put a full stop under my life. “This is what I was; this is what I am now. This is the changeover.” And because I exercise a lot, I decided running the London Marathon would be a good idea. I started training and I couldn’t do it, my back just wouldn’t do it. By pure chance I heard on the radio, I always have Radio 4 on as oral wallpaper, something in the morning about how it was possible to now become an altruistic donor.  

Apparently you have been able to do it for several years, but I hadn’t heard about it. And it struck me like a bolt from the blue. It was a real light bulb moment. I thought, “This is it. I’m the perfect candidate. I’m fit. I haven’t got dependants.” I thought that was important if I was going to go into quite major surgery. I didn’t want to not get out the other end and therefore have elderly parents or children that depended upon me. I had neither.

Also being single and not having children, I’m aware that I haven’t left a mark on this life. Well hopefully I have, but there won’t be anything left after I’ve gone. By donating a kidney I will hopefully extend someone else’s life and a part of me, a result of that, will live on. I will have been able to have given something back.

I’ve had surgery before for minor things, it doesn’t bother me. I’m not scared of hospitals, that sort of thing. I have a medical background in that I’m a vet, so I understand the becoming involved, the physiology, so that didn’t hold any terrors for me. 
 

When deciding to donate a kidney, donors took into consideration the level of personal risk from the operation. All operations carry some risk and this is no different for living donation. Donors are at risk of infections (e.g. chest, wound or urine) and, more rarely, bleeding or blood clots. There is a very small risk of death for the donor' for this operation it is estimated at 1 in 3000. (NHS Blood and Transplant 2015). Donors with families often had to reassure them that the risks of the operation were very small.
 
Donating a kidney does not mean that the donor’s health might not be affected in some way in the future. It is always possible that something unexpected could happen to the remaining kidney. As the health of all donors is thoroughly assessed before donating, the chances of this are very small, especially if the donor has a generally healthy lifestyle after donation. In the unlikely event that a problem occurs with the remaining kidney, dialysis treatment may be needed earlier than if the person had both kidneys.   

“The overall risk of developing ESRD (End Stage Renal Disease) after kidney donation remains very low, occurring in less than one in 200 (0.5%) donors, and it remains much less than that of the general (unscreened) population.” (Addendum to the UK Guidelines for Living Donor Kidney Transplantation -November 2015*)
 
Once the people we interviewed had decided they would like to become a donor, they needed to be thoroughly assessed to see if they would be suitable (see ‘Assessment and tests’). Several advised other people to think about living kidney donation as it could help transform someone else’s life (see Views on organ donation' living donors’).
 
We did not interview any adults who had donated a part of their liver, lung or small bowel. If you are over 18 and would be interested in sharing your experiences for this website, please email info@healthtalk.org.

Last reviewed May 2016.
Last update May 2016.
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